Friday, August 25, 2017

Me, Myself, and MS

(The Multiple Sclerosis Association of America asked me to write a guest post for their blog, MS Conversations, on the subject of MS and relationships. This is the essay I wrote for them. Please check out the MSAA's website (click here) which offers a wealth of info on all aspects of the disease, and material and financial help to MS patients in need. Also visit their blog, which features posts from many different writers (click here). The MSAA is a terrific organization, and I hope you'll take some time to get to know them.)

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, the wound is where the light enters.

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected, and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns and rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within.

"The spirit within" is quite powerful once you find it & allow it to be what it's supposed to be. For most of my life, I wasn't living as "Mary" because I didn't actually know who "Mary" was! Reinventing myself has been a fascinating journey. Marc, thx for writing this piece. I hope I get the chance to actually meet you someday!

Would be wonderful to meet you. Yes, learning to be "you" is one of life's most difficult lessons. So much to cut through, and so little time. I suppose the one thing MS gives us is time. Takes pretty much everything else, but the time it provides allows us to explore all the spaces within, and come up with some pretty startling finds. Wisdom? I'm not sure, but self knowledge, definitely.

Bravo! Well done. You captured the spirit that so many of us have — "And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me."

Thanks, Mitch. I know you've done a lot of delving into everything that's rattling around your brain pans as well as aspects of your past that might've been overlooked otherwise. And without MS, we most likely would never have had the chance to know each other. I'm certainly glad I got to know you…

As always, Marc, your comments are enlightening. We cannot select what challenges come our way, like disabilities, but we do get to choose how we respond. You have chosen to help scores of people through your enlightened words. Thank you my friend.

Thank you, Betty, for all you've done for the MS community as well. One of the largest benefits this blog has provided me has been to put some method to the madness of my getting this disease. I'm sure you can relate…

Your post really hit home for me today. I had plans tomorrow with some friends from before being disabled, which fell through today. Although I usually understand that people have lives unto themselves and sometimes things just don't work out, I realized today that I am the person initiating interaction. The simple truth is that I am limited in what I can do socially, and I sometimes need help such as with getting my wheelchair in & out of a vehicle (Unfortunately, I live in a city with good public transportation options.) Many of my "old friends" just aren't up to meeting my needs. I need to accept this change and move on with my life and get to a more peaceful place in my life.

Yes, it's difficult accepting that the person we used to be no longer exists, at least in the physical sense. Inside, I'm still gloomy I used to be, and that "me" never ceases to be shocked to find itself in this dysfunctional body. But, yes, adjustments must be made, and we must find some measure of peace despite that. These days, I often find that the anticipation of the stresses involved with socializing almost make the effort not worth it. But then, when I do make the effort, the rewards make those efforts seem justified. At least most of the time… We just have to realize our limitations, and try to work within them.

It is grace we are sometimes led to on this difficult journey. It can be a challenge to recognize and accept that grace. Tempted to dismiss it during to MS' more onerous manifestations, I still would like to believe grace is attainable.

Agreed, I think grace is attainable, but it's not a permanent state. There are a whole lot of other states that one reaches when dealing with the progression of illness, some of them quite negative, others positive. Grace is the far end of the positive spectrum, I find most of the time is spent somewhere between grace and whatever is its opposite.

Yes, Hilda, control is nothing but an illusion. That's why most control freaks are usually unhappy. It is all about choice, and learning that we can indeed choose. And the choices we make are very personal, and unless they have a directly negative impact on others, generally shouldn't be questioned.

You are very welcome. I tried to keep my writing as honest as possible, and try to balance the obvious negatives of being sick with whatever positives there are to be gleaned. And sometimes, one just has to let loose with a rant. Also, it's important to keep things in perspective, not take yourself too seriously, and maintain a sense of humor.

Your post help me to soldier on in the face or rather despite my 2PMS, even if now having to adapt to blood cancer diagnosis as well. I have yet to share what that means on my blog as it tends to evade the issue in some ways.

So sorry to hear of your additional diagnosis. I understand your not wanting to share everything on your blog, believe it or not I do keep some things to myself or at least only reference them only peripherally on the blog. Wishing you the best in the battles to come.

My dear friend Marc, We were so different many years ago when I began to read your blog. We were diagnosed in the same year and I am more of a unicorn and rainbow sort of person, but we seem to be converging and stumbling upon very similar insights. I wish we could have met when I was more mobile. So glad to know you now. Much love to you both. Aliyah

Looks like I'm a little late to the party - over 20 comments in just three days! As always, another great post Marc. MS is far from a gift, but for those of us who have gained such great insight into what is truly important in life, well, at least we got a booby prize...

Profound words, but also touch on basic truth. It's hard to meet ourselves with illusions stripped. Then the perpetual, non-linear grieving process surely knocks us off our tenuous rock in rough seas. It's like a sadistic jailer, who when we face him/her it's our own reflection staring back. There's no room for pretense when facing Plato's cave.

Sign up to Receive New Posts by E-Mail

E-Mail Me

Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...